Tuesday, May 31, 2011

Image by flavijus via Flickr Here in the USA, we just finished celebrating Memorial Day, which is considered the unofficial start of summer here, even though the summer solstice isn't until June 20th.

Robert and I spent part of our holiday weekend putting together our new barbeque, bought to replace the 10 year old one that was falling apart in the backyard and truly beyond repair. Warmer weather for us means switching from cooking inside to grilling outside, so we will be putting our new grill to a lot of good use over the next few months. Some of our favorite dishes are boneless, skinless chicken breasts, turkey burgers and vegetable kabobs.

I've also been trying to get my container vegetable garden together, though this has suffered as I have been distracted by a bunch of other stuff that needed my attention more urgently. So this year I resorted to buying seedlings from the hardware store rather than starting my garden from seeds. Time will tell if this method yields a different (better?) result.

Unfortunately, this time of year means warmer weather. My dysautonomia impairs my ability to sweat properly, which makes me more vulnerable to heat-related problems. That translates into using the air conditioning more and retreating inside the house during the hottest parts of the day.

Ironically, many indoor venues like stores and businesses don't keep their thermostats turn down low anymore during summer, so I often find myself walking out and heading home if it's too hot inside my destination. I don't know if this is a strategy to conserve energy or save money, but either way it's making it harder for me to cope with hot weather.

With so much of my attention focused on summer, I'm wondering if your thoughts have strayed the same way. Do you do things differently this time of year too? Are you planning any vacations or other special events? Do the summer months bring new challenges that require changes to your chronic illness self-management strategies?

Thursday, May 26, 2011

Image via Wikipedia(Please note: This post was originally scheduled for May 12, 2011. It's publishing was delayed due to Blogger platform problems.)

There are a lot of good reasons to meditate. For me, one of the most important is the ability to gain insight into your life through the quiet moments created during meditation. This discovery has recently led me to an appreciation of what it means to be an underdog.

What follows is a sequence of thoughts I watched flow by in my mind during a recent meditation session. The technique used during this session was to simply notice the thoughts and let them work themselves out without trying to consciously alter their appearance or content. So in essence, I let my mind wander where ever it wanted without an investment in what the outcome would be. If a feeling arose connected to any of the thoughts, I simply allowed myself to feel the feeling and then let it go.

It's no secret that recently I've been particularly bogged down by an assortment of troubles. Since many of these troubles are connected to people in my life, I got to thinking about how my current circumstances make it appear to these people that I am all wrong. Quite simply, I am dealing with people that think they are right and they are out to prove it.

This has translated into a lot of hassles for me.

Ordinarily I'd choose to ignore troublemakers, but the situations created by a few select people in my life recently aren't the kind of situations that can be ignored without negative consequences for me. In other words, I've been put into situations where I must respond.

The first problem with people who think they are right is that they seek to subjugate other people with their righteousness. That's just not right. The second problem with people who think they are right is that they are not always right. Have you seen how crestfallen the righteous are when they find out they aren't? The third problem with people who think they are right is that they underestimate the drive, motivation and determination they inspire in those they have made the underdog.

Yes, I am currently the underdog, but that is OK with me. That's because I realized what being an underdog truly means:

Underdogs never take anything for granted. They work at 110%, are smarter, better prepared and more successful at everything they do. People often make the mistake of discounting the underdog. The top dogs laugh and think you are beaten. They forget the underdog fights harder and is more motivated to obtain success.

Honestly, I'm happy always thinking of myself as an underdog, because when you're down the only direction to move in is up.

I LOVE being an underdog.

I hope this example conveys the true power meditation can have in opening your mind and allowing the stillness to lead you to places that can bolster your spirit and ease your mind. I am pleased to share that once I was able to see myself as the underdog, I was able to put my troubles into perspective, ease my mind and figure out ways to creatively deal with the situations I find myself in.

Above all, this insight helped me reaffirm to myself that I was indeed strong enough to conquer my current tribulations, just like I am successfully facing the challenge of life with chronic illness on a daily basis.
I am a hero who never fails. There's no need to fear--Underdog is here!

Tuesday, May 24, 2011

Image by EssG via Flickr
Last night as I was standing in front of the microwave waiting for my leftover won ton soup to reheat, I started thinking about our upcoming 13th wedding anniversary on May 31. Which lead to thoughts about the Penny in the Jar theory of marital sex.

For the uninitiated, the theory goes something like this:

Put a penny in a jar for every time you had sex BEFORE you got married.
Now remove a penny for every time you have sex AFTER marriage.
They say that once you are married, you’ll never empty the jar.

That got me thinking about all the ways that my chronic illnesses have been pilfering my sex pennies! So here I go: I am going to talk about how my chronic illnesses affect my sex life.

Hepatitis C

Being a responsible adult, I let my partner know that I had a blood-borne illness I could potentially spread through sexual contact. Granted, the odds of passing Hepatitis C (HCV) in a monogamous heterosexual relationship is only about 1% per year. But when you are telling someone you want to get intimate with that you have HCV, you never know how they are going to respond. Disclosure can be a real relationship litmus test.

My husband obviously passed this test with flying colors. We "had the talk" and he decided he felt comfortable with this very small risk. Yet despite our decision, I still feel the occasion pang of worry every once in a while.

Infertility

Nothing has the power to make sex not fun like an infertility diagnosis.

We started with a lot of hopeful sex in the service of getting pregnant, followed by disappointment when it was clear it wasn't happen. So we tried again, this time tinged with fear, doubt, duty and hope, only to be disappointed again. By the time we got to the infertility doctor's office where we willing submitted to humiliating exams and got the subsequent bad news, the joy of sex has been replace by feelings closer to anger, betrayal and sadness.

From that bleak place, it takes quite a bit of work to get back to a place where lovemaking becomes something fun once again.

Chronic Pain and Fatigue

Talk about 'Not tonight honey.'

These two buzz kills really drain my penny jar. So even when I am in the mood, they rear their ugly heads with physical roadblocks to having fun in the bedroom. I mean, how sexy am I when I am complaining about being in pain or I am needing to stop and rest like every five minutes?

Like everything else in my life, I've needed to figure out ways to work around these handicaps in the bedroom. This means I am doing "it" much less than I would like simply because I don't have the energy. To put it another way, my sex life is more about quality than quantity these days.

Early Menopause

Yes, I know that all women deal with this sooner or later. Personally, I wish it had been later. My experience with early menopause, caused by my cancer treatment 23 years ago, has not been a pleasant one. Plus I am at a disadvantage here because I don't have a mother or aunt to guide me through this transition. Not that I would necessarily be talking with them about how menopause is putting a crimp in my sex life...

...then again, I never thought I'd be writing a blog post about this either!

In conclusion, all I can say is thank goodness my marriage is about more than just sex. I am grateful that I am married to a man who sees me as more than just a lover. Being each others partners, friends and confidantes really helps smooth things over when chronic illness makes lovemaking complicated.

So sure, chronic illness is draining pennies out of my marital sex jar. And sure, for me having chronic illness means I'm not having as much fun in the bedroom as I would like. But I still have a sex life.

Monday, May 23, 2011

On second thought, maybe it's not so much that I'm a bad blogger but a bad planner.

No, upon reflection, I don't think that's quite right either.

Here is the thing: I have been completely overwhelmed and stressed out for the last two weeks. I'm just going through a phase where if anything can go wrong, it will. Just because I'm sick chick who stays at home and does much of her living from her couch doesn't mean there is less stress in my life.

To add insult to injury, fibromyalgia lessens my ability to manage stress. I've come to realize that this is just part and parcel of the fibro-fog that plagues most people living with fibromyalgia. Which means that instead of facing stress cool, calm and collected, stress turns me into a discombobulated mess.

It is not a pretty sight.

I know a healthy me would have handled the last fortnight more adeptly. First she would have taken some time to do some planning. That would have translated into either taking the time to write several posts in advance or deciding to take a week off from blogging and informing her readers of that decision. With her blogging tasks squared away, she would have then turned her attention to the problems at hand and created a specific time and place to deal with them.

Under the influence of fibromyalgia, I found myself distracted, disorganized and disintegrating under the pressure of stressful circumstances. Despite my best efforts to calm down and get focused, it seemed like every new detail that unfolded only served to get me all riled up again. Along the way I marveled at how fibromyalgia had changed me from skilled at dealing with stress to a totally crumbling cookie.

So when my feared day of reconciliation arrived last Wednesday and my dread melted into relief, I found myself needing to just escaped for a couple days to rest, relaxed and recharge because I was completely and totally wiped out. Like a computer running on battery power, I had gotten to the point where there was no power left and I had no choice but to shut down.

In short, I just needed to get away.

Has this ever happened to you too? Have there been times when life and chronic illness are just too much and you just need to get away?

Wednesday, May 18, 2011

Image by Phoenix Dark-Knight via Flickr
I really like the video below and wanted to share it with you today. The creator is a young woman living with fibromyalgia and she published this video on YouTube this past Thursday, May 12th for Fibromyalgia Awareness Day. If you like this video too, you can click on it to head over to YouTube where you can leave this beautiful young woman a nice comment and some encouraging words.

Monday, May 16, 2011

Image by bitzcelt via Flickr
A few days ago, on Friday the 13th of May 2011, the first antiviral drug for the treatment of hepatitis C was approved by the FDA. Merck's antiviral drug named boceprevir, which will be to be sold as Victrelis, is the first new drug approved for the treatment of hepatitis C in 20 years. It is the first of many new antiviral drugs in the pharmaceutical research and development pipeline that are destined to change the way hepatitis C is treated in the 21st century.

Now that is pretty heady stuff.

Lord knows I have been waiting for this day since the late 1990s. I thought for sure that these antiviral drugs would be just around the corner after the release of the first antiviral drugs for the treatment of HIV in 1995. I was actually looking forward to my own antiviral cocktail to take care of my hepatitis C infection so I could cross it off my list of current health problems.

I've waited a long time for this day. Today I can see the first rays of hope coming through the window.

That said, I'm feeling quite a few different things after hearing this good news.

I'll be honest, my first reaction was, "What the heck took so long?!?"

Then, when I read the prescribing guidelines for Victrelis, I felt both disappointed and fearful.

Victrelis is not a stand-alone treatment and at this time must be administered along with the standard treatment of peginterferon and ribavirin.

Then I read the list of side effects. The side effect I'm most worried about is anemia, a known side effect of ribavirin and now apparently a side effect of Victrelis too. Anemia from ribavirin landed me in the hospital back in 2007 and made my doctors think I was having a heart attack. It took me several months to recover from that hospitalization, an experience I am not eager to repeat.

In addition, either missing or taking one dose late of Victrelis opens the door and allows the hepatitis C virus to build resistance against this new drug. That means I would literally have to be perfect in taking this medication, something that almost seems impossible to do.

My third reaction was confusion. I got mixed up watching a video that talked about when you start taking this new drug and how long you need to take it. It seems there are several different timetables depending on how you respond to treatment.

I admit that my initial excitement was tempered when I got behind the headline and immersed into the details.

So despite the good news, I know the waiting isn't quite over yet for me. Since I had so many problems when I attempted the standard treatment back in 2007, I think I need to continue to hold out for an antiviral cocktail that doesn't include the current standard treatment so I can avoid the side effect of anemia.

I know I'm not alone when it comes to waiting for new drugs to be approved for treatment. I'm aware that back in March the first new drug in over 50 years for the treatment of lupus was approved by the FDA. In the last several years, the FDA approved the first three drugs for the treatment of fibromyalgia.

So this week I'm wondering what your reactions have been when you've heard about new drugs being approved for the treatment of your chronic illnesses. How do you respond when you hear about a new hope?

Now I'm really hoping that the tech geeks at Blogger and Google have fixed that problem which prevent some of you from reading my blog and leaving comments last Thursday and Friday. But if that is not the case, then this would be a good week to check out the Oh My Aches and Pains Facebook page and join the discussion there.

Thursday, May 12, 2011

I recently Googled "Why do we have awareness days?" and got page after page of search results on all kinds of different awareness days.

One person said they had a calendar that featured at least one awareness event for each day of the year. Now that seems like quite a lot of causes to keep track of every year. Another person suggested that an awareness day should be: a day of action...that will focus on grass-roots activism organized by local activists. I'm not exactly sure what that means, but that sounds like a lot of action.

Truth is, besides writing this post, I'm not sure what I am supposed to be doing today on Fibromyalgia Awareness Day 2011.

With three FDA approved drugs and a whole series of drug company commercial talking about fibromyalgia, I have to question whether we need a day to make everyone aware that fibromylagia exists. Yeah, I know the point of those commercials was to sell drugs, but I think they also increased awareness and legitimized fibromyalgia. Which I guess lends credibility to the saying, "All publicity is good publicity."

Because of these drug discoveries, it seems inconceivable to me that someone in the medical profession would deny the existence of fibromylagia when there are three drugs they can prescribe to attempt to treat it.

While three drugs are a start, these drugs aren't a cure. More research and development is needed to uncover more treatments. I've read that only 30% of people living with fibromyalgia response positively to the medications used to treat it. Clearly there is more work to be done in this area.

Pinpointing what triggers fibromyalgia would help treatments advance too, not to mention lead to prevention strategies so that no one else needed to suffer daily chronic pain and fatigue.

Plus I know there is more education that needs to happen about what fibromyalgia truly is. There is emerging evidence that fibromyalgia is a brain disorder. That is why drugs like Lyrica, Cymbalta and Savella, which have an effect on the brain and nervous system, seem to help some people with fibromyalgia. Which makes me wonder if the treatment of fibromyalgia will eventually transition from rheumatologists to neurologists.

By the way, knowing that fibromyalgia is a brain disorder helps us understand why it is so difficult to treat. I've heard medical professionals say that neurological conditions present some of the biggest challenges in medicine today. Having spent time at the neurology clinic, both for myself and with my dad who had Alzheimer's disease, I have first-hand knowledge of this fact. The brain remains the last unconquered frontier in medicine. Not only is it still unclear all the things the brain does, there currently are no treatments for restoring brain function to normal once it has been altered or destroyed by illness or disease.

So I think that fibromyalgia awareness today is less about shouting "This illness is real!" and more about educating people that there is still a long way to go to successfully treat this syndrome. It is about continuing to put pressure on all the entities that fund and conduct research on fibromyalgia to keep pursuing with their efforts. I guess this also means that our cause must find a way to wrangle more resources to fund these efforts so that they produce greater results. This seems like quite a formidable task, given that there are at least 364 other worthy causes filling the calendar each and every year vying for the same limited pot of resources to make a difference for their causes too.

Which leads me to my final thought: Fibromyalgia Awareness Day is about hope. Hope that in some research lab somewhere there is a happy accident that results in the discovery of new knowledge and/or new treatments that foster better outcomes for people living with fibromyalgia today. Until that happens, I hope that someone uncovers something honest and real that can truly increase the quality of our lives while we are waiting for our medical miracle. Ultimately, I hope that people with fibromyalgia can one day regain their fullest potential, enjoy life completely and leave chronic illness behind.

I think today I am going to allow myself to daydream about that day in the future when Fibromyalgia Awareness Day is no longer on the calendar.

Tuesday, May 10, 2011

Image via Wikipedia
As much as I would like to think that my support system intuitively knows how to help me, sometimes they don't come through for me. I've come to the conclusion that they do want to help me, but every once in a while they forget how to do it. It reminds me that being able to offer support is a skill that must be learned and practiced.

Recent events have made it clear to me that it's time for a little refresher course for my support system on how to offer support.

Just Listen

Lesson number one is just listen. And when I say listen, I mean focus your entire attention on the words being spoken to you and let go of trying to come up with a response to what you hear. We so often get distracted by how we want to respond to what someone is saying that we stop listening to the other person. In that moment, we get disconnected from what is needed most from us--a sympathetic ear.

Active listening is a hard skill to master. But I think you will agree with me when I say that our greatest supporters are the ones who are able to simply listen to us when we need talk. They are the ones who fully absorb our monologue and can reflect our words back to us. In this way, they act as a sounding board, helping us view our thoughts and feelings in a different light.

Stop Talking

Lesson number two is stop talking. As I mentioned above, when we listen to someone speaking we often get distracted trying to come up with a response to their words. This often leads to us to interrupting the speaker and introjecting our thoughts and opinions in to their monologue.

We sometimes forget that it is often easier for us to understand other people's problems and harder for us to see our own. We forget that to help someone else get a clearer view of their problems we must let them talk. It does no good for us to jump in with our insights and solutions. We need to remember that the best solution for someone else's problem is the solution that they come up with for themselves.

Again, I think you will agree with me that the people who support us best are the ones who guide us to our own solutions.

Say Something Nice

When the speaker is done talking, it's time for the third and final lesson: say something nice. What I mean by "nice" is say something that is empathetic and supportive. Things like: I am sorry you are going through this. This sounds like a really tough situation. I can see that you are really upset by this. I know you will figure out what to do about this. I am here for you whenever you need to talk.

I see this as the part where you, the listener, let go of your thoughts and feelings about the speaker's situation and focus on the support they need in the moment. Because the bottom line is your thoughts and feelings about the situation don't matter. If you want to support your friend, you need to focus on your friend. Your friend needs to figure this out for themselves, and unless you are directly asked, your opinion about the situation isn't relevant.

We don't always have to agree or see eye to eye with our friends, but we do need to show we care. Which I guess means if you find yourself over and over again in situations where you can't put your opinions aside in order to be supportive, then perhaps the friendship isn't meant to be.

Fostering the Support You Need

Reviewing these three lessons, you now know what to ask for when you approach someone for support. If they start talking and offering solutions, you can let them know that you just need them to listen. If they are not sure how they can help you, you can let them know that by listening to your concerns it helps you explore your situation and come up with an answer that will work for you. If their words sound critical or judgmental, you can let them know that saying something nice helps you feel understood and supported.

In addition, practicing these three lessons when a friend comes to you for support demonstrates to them an effective way to help someone in need.

So you see, with a little patience and coaching you can create a support system that is responsive to your needs.

Monday, May 9, 2011

Image by maximolly via Flickr Is it just me, or is the world going to hell in a handbasket?

It seems like it's just been one thing after another for me since about the middle of March. One bad thing after another that is. Over the last two months, the rule of the day has been If something can go wrong, it will.

It's so bad I've resorted to speaking in clichés!

In all seriousness, I've got way too much stress in my life right now. I keep thinking to myself don't get sucked up into other people's drama. I now realize that is incredibly hard to do when people are going out of their way to cause problems for you--problems that can't be ignored and require some action on your part.

To add insult to injury, my support system has been less empathetic and responsive to my needs. This has added a whole other layer of stress, because now I am feeling both attacked and unsupported.

It leaves me wondering when all this madness is going to to the end.

Last week I realized that I needed to do more to manage my stress after I was so upset that I threw and broke something out of sheer frustration. So I decided to devote the month of May to meditating more and stressing less. I've also increased the frequency in which I asked for the Universe's help. And since this stress won't be going away for a while, I've decided that periodically retreating to my "girl grotto" isn't such a bad idea either.

Ironically, an e-mail I received today contained the most support I've gotten in the past two months:

The reason for all the challenges, Selena, is so that you can finally learn that none are bigger than you. None. Ever.~The Universe

It's strange how oddly comforting those words were to me. I'm still a little miffed that the Universe has picked this particular time to bombard me with challenges, but then again there really is no perfect time for this kind of thing to happen. At least I have a better handle on the lesson I'm intended to learn.

Since I know I'm not the only person that bad things happen to periodically, this week I'm asking you to share with me your coping strategies to deal with times when the proverbial shit hits the fan. When things get really bad, how do you deal with it? I'm always looking for new ways to manage my stress and I bet there are things that you do that I should be trying too.

Saturday, May 7, 2011

Over the past several years of blogging, I have sucked it up and put on a happy face when it comes to writing about Mother's Day. (You can read them here and here.)

Well, I decided I'm not going to do that this year.

Here is the thing...

As a girl, I really struggled with this Hallmark holiday because I did not have a very motherly mother. In fact, my deceased mother was whatever the opposite of a mother is.

When I described my mother to my friends in grade school, the first question they asked was, "Is this your step-mother?" Boy did I wish that the answer to that question was, "Yes."

Needless to say, my circumstance made it pretty difficult to come up with something sincere and heartfelt to write inside of the card I bought my mother every year. One year I actually wrote Thanks for giving me life. because those were the only kind words I could muster that year.

It amazes me that in spite of that rough start growing up, I knew from the time that I was a teenager that I wanted to be a mother myself. At the very least, I figured I could do a better job than my mother did. But the Universe had different plans for me. It made me choose between fighting cancer or preserving my fertility. Since you can't have kids when you are dead, I chose to fight.

Then, just when I got my life into a good place to pursue adoption, disabling chronic illness put the kibosh on my plans.

I hate to admit this, but in the weeks leading up to Mother's Day I start think about all the women in the world who are "breeders." Then I think how crazy it is that we celebrate those women who, through luck, mishap or fate, give birth.

How unfair is that to all the women like me, who desperately want but can't have children?

I'm not saying that mothers who take their job seriously and do everything they can to be good moms don't deserve a day filled with applause and recognition. Motherhood is hard work and mothers deserve flowers, gifts and thank you's every day of the year. I just have a problem with a womens' holiday that excludes women who haven't given birth.

Every year the thought crosses my mind that I should just make Mother's Day my own personal pity party and just not tell anyone. I should just stop celebrating Mother's Day.

But after some more thought this year, I have a better idea.

Let's change Mother's Day into Mothering Day.

Mothering Day would celebrate the act of being a mother, which means anyone and everyone who mothers can celebrate. That means all the family members in a child's life, both female and male, as well as community members like childcare providers and teachers, could stand together and enjoy recognition. This new celebration would bring together the village that surrounds each child born into this world.

In addition, I think Mothering Day is also an opportunity to do two more very important things:

help children in the foster care system get adopted and find forever families

encourage more people to get involved in children's lives through volunteering and supporting children's charities

I also feel that Mothering Day is inclusive of those who nuture and care for animals, pets, gardens, farms and all the other things on this big, blue planet that need love, attention and tending to flourish and grow.

So am I advocating for the abolition Mother's Day?

Perhaps, though I doubt I have the power to remove it from the calendar. But if I do, at least I am offering an updated, modern alternative.

Have I upset all you mothers out there with this post?

I hope not. But if I have, be sure to let me know by leaving me a comment.

As for me, I think the process of writing this post has help me decide against turning Mother's Day into a personal pity party and transform it into a celebration this infertile woman can embrace and enjoy.

Thursday, May 5, 2011

As you know, I am in search of my "sweet spot" through the optimal combination of self-help techniques for managing my fibromyalgia symptoms. So far, we have covered the topics of making activities more fibro-friendly, using symptom logs, planning for special events and exercise. By the way, if you have missed any of my posts, just click on the words Mission 2011 above to get caught up.

Now I don't know about you, but lately I seem to be going through a rough patch with way more stressors in my life that I would like. Which got me thinking about adding more activities to my daily routine to help me combat stress and promote my overall well-being. Things like meditation and using my emWave Personal Stress Reliever.

Given my current situation, I decided this would be the perfect time to explore this subject further in my Mission 2011 posts.

Now I know that mediation can be good for me, but I often struggling with trying to consistently practice it. Turns out I'm not alone. I stumbled across a fun and helpful resource to get me back on track that I am going to share with you today. It's a website called HEADspace. They partnered with the British-based Guardian newspaper earlier this year in a series to make meditation more accessible to everyone.

I really like their approach, which strives to make meditation practical, easy and bite-sized. So I've included their Start Happy introduction to meditation video from the Guardian website below. I also encourage you to visit their website and get started with the Tools and Techniques section like I did.

For those of you in England (or inclined to travel there), HEADspace offers in-person training too.

Enjoy this kick-off to a month of exploration on the topic of meditation. Cheers!

Tuesday, May 3, 2011

As I mentioned yesterday, watching the Royal Wedding last Friday got me thinking about a lot of different things. So today I want to talk a little bit more about love, marriage and chronic illness.

In Sickness and In Health

As I listened to Prince William and his bride Kate recite their wedding vows, I thought about the words Robert and I exchanged at our wedding. I actually went searching for the vows we decided to use for our wedding and found them tucked away in a box of memories from that time, almost 13 years ago. Here are the words we said to each other on our wedding day:

I take you to be my spouse, in equal love, as a mirror for my true self, as a partner on my path, to honor and cherish, in sorrow and in joy, till death do us part.

I also discovered the words the officiant at our wedding, the captain of a Hornblower Dining Yacht out of Marina del Rey, said to us:

Robert and Selena, you have come here today to fulfill the promise you have made, each to the other, before your family and friends. You come to combine your two separate lives into one.

As you begin to share your lives together, never forget you are two separate people. Cherish and affirm your differences. Love each other. Keep your commitment to each other and your marriage. Together you will share what life brings to you: joys and sorrows, sickness and health, prosperity and scarcity.

Back then neither one of us knew that chronic illness would become part of both of our lives. Even though I am the one that is sick, my chronic illnesses have a profound impact on my husband and our marriage. Because of chronic illness, both of our lives have been disrupted and we have needed to make changes on many different levels. Fortunately, we continue to learn to share what life brings us and do our best, separately and together, to cope with this difficult situation.

Live, Love, Laugh

Much to my surprise, I also found words of wisdom amidst the program from our wedding. The officiant said the following things to us as well:

To ensure a healthy, lasting marriage, always, always value each other. Although you may disagree, remember to respect each other's feelings, needs and wants. And above all, do not lose your sense of humor. Remember to continue to grow, sometimes together, sometimes separately. Love and life are always changing, always new.

Marriage is intended not to provide haven from pain, anger and sorrow. Instead, marriage is intended to provide a sanctuary safe enough to risk loving, living and sharing from the center of one's self. Marriage is a covenant that says: "I love you. I trust you. I will be here for you."

Although neither one of us remember these words spoken almost 13 years ago, they nevertheless are words that we continue to live by. I am truly lucky to have a spouse who is there for me, no matter what. It's not always pretty, but at the end of the day we do value and respect each other and certainly have not lost our sense of humor.

We know firsthand that life is always changing. Separately and together, we grow to meet the challenges.

Partners on the Path

As exciting as weddings are, they are but a moment in time. As I watched the Royal Wedding on Friday, I couldn't help but wonder what lies ahead on the path for Prince William and Catherine, the Duchess of Cambridge. Beyond the fairytale, I can see that being married to a member of the nobility is quite a challenge indeed. For all the perks, I am sure there are some pretty high prices to pay.

In my own situation, I can see that chronic illness exacts a price on my own marriage. It certainly is a reminder that life is not fair. So far, the partnership I share my husband has been able to weather the storm.

The truth is no one knows for sure what lies ahead on our paths in life. Having a partner to share the pain, anger and sorrow, whether that be a spouse, a family member or a friend, can certainly make the journey more bearable. We all need people in our lives to love and nurture and support us and I am fortunate that my husband is committed to being one of those people.

Monday, May 2, 2011

From high to low's, I think the last three days in current events have had a little bit of every emotion there is.

A Royal Wedding

Yes, I was one of the crazy people who stayed up all night here on the West Coast to watch the wedding of Prince William and Kate Middleton. I admit I got sucked into the whole pomp and pageantry once I started watching it on my television. This affair was on such a grand scale! It simply boggled my mind how much planning went into this event, how many people were involved, the logistics in managing both guests and crowds and how much this wedding must have cost.

The spectacle of it all made me grateful for the small, intimate wedding my husband and I planned almost 13 years ago.

I also marveled at how heartfelt and meaningful the actual wedding ceremony was. Despite 1300 people in the cathedral and billions of people watching on television, it felt like a small and intimate moment when Prince William and the Duchess of Cambridge exchange their wedding vows. Their love for each other came across beautifully and clearly.

As I watched, I thought a lot about marriage. Having been married now for almost 13 years, the wedding vows Prince William and his bride exchange have a different meaning for me. Committing yourself to another person, to face life together no matter what the future holds, is a brave and courageous thing indeed. I now know that marriage is not only an act of love, it is an act of faith and hope as well. My husband and I are currently living the "in sickness and in health" part of that covenant.

Once the ceremony was over, the enormity of this event took over. I know a lot of little girls dream of becoming a princess, but I for one am glad that I don't have to live my life in a fishbowl like the members of the British royal family do. I was simply amazed by the number of people who congregated in front of Buckingham Palace to catch a glimpse of William and Kate's first kiss.

When I finally shuffled off to bed at six o'clock in the morning, I was full of love, hope, excitement and contentment.

Osama Bin Laden Is Dead

What a unexpected way to end the weekend!

After watching some shows we had TiVoed, we took a break and I checked my Twitter stream. That's when I saw a bunch of tweets about Osama bin Laden being dead. I called my husband from the other room and we switched on live television to get the story from broadcast news.

After about 15 minutes I told my husband I had watched enough. Like so many other major events, this is a story that the media gets quite caught up in and tends to devote a lot of broadcast time to covering. I know myself well enough to realize that getting caught up in the media coverage will only make it more difficult for me to sleep and get me all riled up.

I have to say that in the short time I did watch the television coverage I felt a lot of different emotions. Memories came back from the terrorist attacks on 9/11 and fears arose that Al Qaeda would plan some kind of retaliatory strike. I felt relief that a chapter in history might be coming to an end at the same time worrying that terrorism would not come to an end in my lifetime. I saw people gathering and celebrating this news and felt strange about rejoicing over the death of another human being.

As I write this before I head to bed, I feel many different and varied things over the death of a very terrible man.

So How Do You Feel?

This week I just want to check in with all of you and see how you are processing all of the information you've been bombarded with over the last 72 hours. I want to know your take on current events and how they are affecting you physically, mentally and emotionally. Feel free to share your thoughts and feelings here in a comment or head over to the Oh My Aches and Pains! Facebook page and join the discussion there